Hey, The Band, February is Heart Awareness Month, and we’d love your story.
This is my story:
Most of us, well, we don’t think much about their hearts.
From A&P, I saw precisely what one looks like and was a little disappointed. It also looks like a fatty Nerf football, which doesn’t do it and it’s job any justice.
I know I’ve waxed poetic about the brain, but honestly, without the heart? There would be no brain function.
For years, I simply ignored my heart because, well, it worked. It’s a luxury most of us don’t have to think about until we’re old and wrinkly. Yeah, yeah, yeah, I mean, I KNEW about a heart healthy diet, I knew things could happen to your heart, or you could be born with a congenital heart defect(s).
The first time I became aware of my heart, I was leaving Las Vegas (no, not that depressing movie).
I’d had a migraine, because, obviously, VEGAS, so I popped a few triptans into my mouth and let them melt in my mouth. I’d not had luck with them so far, but my ancient, forgetful neurologist insisted I try them. He even gave me a garbage bag full of samples, (which is neither here nor there, excepting that if I’d tried to travel with them, I’d have been accused of drug trafficking), and urged me to try these breakthrough migraine meds.
Which leads me to the plane going home from Vegas.
I’m not a nervous flyer, I wasn’t stressed, I wasn’t upset in any way. In fact, I felt great.
Until my heart started a rockin’ beat in my chest. Started, I looked down at my chest to note that while it felt like my heart was going to burst through my chest wall and flop down onto the tray table like a fish out of water.
It took a second because it made things a bit blurry, but I realized that I was experiencing palpitations. So much for my garbage bag of triptan samples. When I returned to the neurologist, I mentioned my rockin’ heart beat and he asked, “are you sure?” (which he may have been directing at old skull on his desk) and I assured him that yes, I was entirely sure. He explained that it was a rare side effect of the triptans, but did look a little oddly at me – I think he’d finally realized who I was.
No more triptans. It wasn’t a huge deal – they’d not really helped and shit, heart palpitations aren’t a joking matter.
At this point, I should have seen a cardiologist.
Clearly, I did not.
Years later (late 2016), I was admitted to the cardiac ICU after going to the ER to figure out why I’d been falling so often – now sober, it made no sense. They ran my labs and my calcium was super high and admitted me. They twerked around my medications a bit, and kept me hooked up to that medusa-like EKG for what seemed like days because it probably was days. Outcome? Prolonged QT-syndrome – chemically (medication) induced.
I should have seen a cardiologist, but I was homeless and broke and let myself forget about it. I mean, it stayed there in my mind, gnawing in the back of my brain stem, but still, did nothing.
I’m a terrible patient.
Last year, I’d found out that my mother had hypertrophic cardiomyopathy – which has a genetic basis, and ignored it again.
Finally, after that stupid little voice in my head reminding me in increasingly annoying levels that hey, this heart-thing is important, Dumbo, I made my appointment at a random cardiac clinic near my house. I went in, Nathan in tow, expecting nothing whatsoever to be wrong. I mean, really – I had enough issues already – and my heart, with those few minor exceptions, was fine.
I got to wear a cardiac event monitor for 30 days (somehow it ended up at 35 days) and every single day/night I wore it, I was in hell. The electrodes itched, they popped off randomly, and they’d choke me now and again. Which is why I took it off around day 20, waiting for the call from the company that monitors for abnormal rhythms, and since I never got the call, I never put it back on.
Bad, BAD patient.
During my scheduled ECG, I laid on the table, knowing they wouldn’t find anything. I mean, I didn’t even think I HAD a heart, much less problems with one.
A couple days later, I was told to get a cardiac MRI. At this point, I kinda rolled my eyes because CLEARLY THERE WAS NOTHING WRONG.
Several days after THAT was complete, I was called back into the cardiologists office, again, Nathan in tow.
“It’s fine,” I told Nathan on the 3 minute drive to the cardio practice. “It’s not a big deal.” Nathan didn’t look like it was so fine, but for all I knew, he could just have been constipated.
My cardiologist steps into the room and starts with, “we’re going to send you downtown to Northwestern,” and that I needed “a genetic screening” because I “had hypertrophic cardiomyopathy.”
“Okay,” I replied, thinking I was making a major gift for geneticists everywhere. I mean, certainly my genes were awesomely superior.
In the meantime, Dave and I worked out a plan to take the kids to a pediatric cardiologist.
The genetic test took approximately 100 years to complete (I never said that I was good at math) and had a failure rate of 60%. Thankfully, my body, like me is highly competitive, and it did work because I was soon to learn that I’d had had five genetic markers for the test (four of which the meaning was indeterminate). The one that I DID have showed that my HCM was genetic, and I had a 50% chance of passing it on to any of my babies.
My heart sank at that – you hate to leave a genetic legacy like THAT to anyone. I’d prepared myself for it, however, because what else beyond teeth-gnashing and pearl-clutching can you do?
At their appointment with the pediatric cardiologist, their hearts were examined and they showed no signs or any development of hypertrophic cardiomyopathy. They’re young, of course, and the yearly monitoring will help the doctor to catch any new developments in their hearts. Plus, I mean, it’s a combination of gene mutations that cause HCM, and with all genes considered, there may be protective genes that reduce the chance of the development of HCM, even if they are carriers.
At least, that’s what I tell myself.
My geneticist was kind enough to send out kits for the kids, and in approximately 150 years, they will find out if they’re carriers.
Until then, we’ll wait and see.
If life has taught me nothing over the last five years, it’s this: life is precious, precious gold, and if you squander it away, whelp, you’re probably not going to get a second chance. If you want to make your mark in this world, get the fuck out there and do it. Don’t be scared, fear can be a good thing – it means you still have something to live for.
“We’re all going to die. We don’t get much say over how or when, but we do get to decide how we’re gonna live. So, do it. Decide. Is this the life you want to live? Is this the person you want to love? Is this the best you can be? Can you be stronger? Kinder? More compassionate?
Decide. Breathe in.
Breathe out and decide.
Nothing is permanent you’ll never know when your time is up.
So do it. Live.”